Tuesday, January 19, 2010

Chemo Brain

I am living, breathing proof that Chemo Brain is real.
For many years cancer survivors have worried about, joked about, and been frustrated with the mental cloudiness they notice before, during, and after chemotherapy. We don't know its exact cause, but this mental fog is commonly called chemo brain.... Even though chemo does not seem to be the only cause, studies have suggested that up to 70% of people who get chemo will notice symptoms of chemo brain.
Here are two very recent examples of why it may be a good thing that I'm not working while I'm in treatment:

Yesterday, as I was driving through Englewood on my way to a check up (and what turned into a very long day of transfusions) I thought to myself, "Englewood sure has a lot of... what are they called? Car stores? No, that sounds stupid. What the hell are they called? Auto shops? No, that's not right. What are they???" And for a minute I could not find the right word no matter how hard I squinted. Finally, my brain cells teased back the word, "dealers!" which I shouted to myself. My next thought was, "Oh boy. I'm in trouble."

Today I pulled out a can of what I thought was organic pumpkin soup from my favorite store, Trader Joe's. I wasn't terribly hungry, but the clock said it was time to eat. I heated up the soup, thinking, "This is pretty thick," only to then realize that the can said "organic pumpkin," not "organic pumpkin soup." So now a I had hot pumpkin in a bowl. What to do? I decided to force the pumpkin soup idea, and I added a bunch of almond milk. Too bland. I added a bunch of curry powder. Curry pumpkin soup sounds yummy. Too bitter. I added blue agave nectar for sweetness. Too weird. So I added a bunch more spices. No telling what I pulled out of the cupboard. By now I had volumes of this stuff, but I was determined not to let Chemo Brain win. The final mixture was edible, but the best part of the meal by far was the crackers I added at the end.

This reminded me of another squash debacle I had when I was in my mid 20s. I had just moved by myself to San Francisco and was amazed by all the new and odd looking produce. Growing up, family meals never really ventured too far out of the box. When I got to California, there must have been a dozen different types of squash (and artichokes totally baffled me). I picked one and found a recipe for stuffed squash. It said to bake the squash whole and then cut it to add the filling. As it was baking, it smelled strange. I called my mother in Scottsdale, described the "squash," and was crushed to learn that I had just baked a honeydew melon. There was just no way to salvage hot melon.

I think this was when I gave up on recipes and developed my skills as a Warmer/Arranger. I follow my rather strict anti-cancer diet by finding healthy, yummy foods at Trader Joe's, Whole Foods and sometimes restaurants, warming them up and arranging them tastefully on my plate. It's a system that has worked quite well for me ever since the hot melon incident. Until today.

I had an impressive case of Chemo Brain after I received 8 completely unnecessary rounds of CMF chemotherapy in late 2000 (see January 17, 2010 post). It improved with time, but my memory is still pathetic. Now I'm told that leukemia cells can hang out undetected in the central nervous system, and because of this, the chemo that I'm receiving, Ara-C, is specifically designed to cross the blood brain barrier. Great. I still have three rounds of very high dose Ara-C to get through. Good thing I have a GPS. Now if I can only manage to locate basic vocabulary words and read food cans.... Hopefully, this blog won't turn into gibberish.

Never mind the fact that I baked a melon in 1985 and I wasn't diagnosed till 2000. I intend to use Chemo Brain as justification for all present and future humiliating fumbles. Why? Because science has my back!



Sunday, January 17, 2010

How Did This Happen? Some Theories

The question, "How the hell did I get leukemia after beating a completely different cancer twice?" bounces around in my brain on a daily basis. Now that I've lived with this diagnosis for 3 months, I've settled in on a few possible explanations.

Theory No. 1
The obvious question is whether the first cancer, Adenoid Cystic Carcinoma of the Breast (ACCB) is related to the second, Acute Myeloid Leukemia (AML).

On October 13, 2009, the same day that Dr. Forte found something terribly wrong with my routine blood tests, and only 6 days before I was diagnosed with AML, I received an announcement about a huge research breakthrough from the Adenoid Cystic Carcinoma Research Foundation (ACCRF). A new cancer gene was found by researchers at the Sahlgrenska Academy in Sweden:
The gene causes an insidious form of glandular cancer usually in the head and neck and in women also in the breast. The discovery could lead to quicker and better diagnosis and more effective treatment....

The research group can now show that the gene is found in 100% of these tumours, which means that a genetic test can easily be used to make a correct diagnosis.

“Now that we know what the cancer is down to, we can also develop new and more effective treatments... says professor Göran Stenman, who heads the research group at the Lundberg Laboratory for Cancer Research at the Sahlgrenska Academy. “One possibility might be to develop a drug that quite simply turns off this gene.”

The newly discovered cancer gene is what is known as a fusion gene, created when two healthy genes join together as a result of a chromosome change.

“Previously it was thought that fusion genes pretty much only caused leukaemia, but our group can now show that this type of cancer gene is also common in glandular cancer,” says Stenman.
That last point didn't seem as relevant to me on October 13th as it was on October 19th when I was told that I have leukemia. In fact, Dr. Forte told me after my first bone marrow biopsy that my cytogenetic tests contained fused leukemia cells. Maybe it's a coincidence, but I'm willing to consider the possibility that there's a connection between two seemingly unrelated cancers that are caused by fused chromosomes.

Theory No. 2
A simple review of the ACCB literature clearly demonstrates that chemotherapy is not recommended because ACCB grows too slowly to respond to chemotherapy. My first oncologist didn't take the time to research ACCB, and relied instead on a well known "expert on breast cancer" for my treatment plan. Together, they decided to treat my cancer "like any other invasive breast cancer," regardless of the fact that this was not typical breast cancer, but rather a glandular cancer. I was given 8 rounds of CMF, a cocktail of three drugs. One of these drugs, Cytoxan, is known to cause secondary cancers, the most common of which is AML. According to the American Cancer Society,
The cancer most often linked to chemotherapy as the cause is a type of leukemia called acute myelogenous leukemia (AML).... Studies of patients treated in the 1970s and 1980s have shown an increased risk of AML after certain types of chemotherapy drugs called alkylating agents were used to treat cancers like Hodgkin disease, non-Hodgkin lymphoma (NHL), ovarian, lung, and breast cancer.

Alkylating agents known to cause leukemia include:
cyclophosphamide (Cytoxan®)....
That "expert," when questioned in 2006 about the bad advice he gave my first oncologist in 2000, predictably denied ever recommending CMF. Needless to say, I switched oncologists and started going to Dr. Forte, who understood the nature of ACCB because he made time to do the necessary research. This is an example of why it's so important that we participate in the research process and not rely on one or even two doctors to decide something as life altering as cancer treatment.

Theory No. 3
From 1957 to 1975, Motorola Inc. used the degreasing agent trichlorethylene (TCE) to clean electronic parts made in its south Scottsdale, Arizona, plant. In early 1975, a significant amount of TCE had been dumped into the area around the plant and TCE had contaminated the groundwater. The area was identified as a Superfund site in 1983. My family moved to south Scottsdale, to the middle of the Superfund site, in 1967 when I was 7 years old. I lived there till I was 18. My mother, also a cancer survivor, still lives in that house. I'm told that the number of cancer cases in that area over the last several decades is staggering. (No liability was found in either the personal injury or the property damage class action suits.)

Research shows that AML can be caused by exposure to benzene, and there are plenty of lawsuits to back that up. Benzene finds its way into many Superfund sites because it's used in the manufacturing process of so many products. Who knows if growing up in the middle of the south Scottsdale Superfund site had anything to do with either of the chromosomal fusion-based cancers I've been fighting? It certainly didn't help.

Theory No. 4
All of the above.

Theory No. 5
None of the above.

The question, "How did I get cancer?" is one that haunts all cancer survivors. We wonder if there was something we did wrong, something we should have seen earlier. The fact is, cancer is random. It doesn't discriminate. All I can do at this point is focus on Theory No. 1 -- the new gene discovery that holds the most promise, hope for future answers and possible treatments for the cancers I've been dealt. In the meantime, we are obligated, whenever possible, to share our knowledge, our mistakes, and the resources we've stumbled across in our attempt to navigate these scary waters. Such is our task, as we put aside the question "Why?" and try to discover the good that can come from something so evil.



Thursday, January 14, 2010

Consolidation Treatment: One Down, Three to Go

It’s hard to believe, but there isn’t enough time in the day to get everything done. I had no idea I would be so busy on disability. On days when I don’t feel sick, there are doctor’s appointments or errands to run in preparation for my next hospital admission. Wednesday and today I went for blood work, fully packed and ready for anything. My counts are dropping, but not so low that I had to be admitted. I had a transfusion of platelets before leaving the hospital on Wednesday, so that’s one less thing to worry about over the next few days. Now if my white cells, red cells and neutrophils would just hang in there, I won’t have to go back into isolation. I'll go back for a re-check on Monday, and if I still feel well, I might be out of the danger zone for the rest of the month till my next treatment at the beginning of February.

I consulted with my biochemist, Nicholas Abrishamian of Chester, NJ, who tweaked my supplements so that I can boost my immune system, detoxify my liver from all the chemotherapy, and help me to stay as strong as possible. He believes that with the right vitamins, herbs, enzymes and other supplements, I can avoid, or at least minimize, getting sick when my counts drop the week after chemo. Dr. Forte has no objection to anything I've presented to him so far in terms of supplements and homeopathic remedies. He said today, "Researchers and doctors have to find a way to learn from each other," and I can't agree with him more.

My first round of consolidation treatment last week was not only punctuated with days of feeling awful, but it also included an experiment with the synthetic form of medical marijuana, Marinol (generic, Dronabinol). Marinol has been around for years, but its efficacy is questioned by many doctors, including Dr. Forte. Since I was still nauseous after taking the usual anti-nausea drugs, we decided to try Marinol for a day. It did nothing for my nausea or pain. The sleepiness and groggy feeling it gave me may have taken my mind off my symptoms, but it wasn’t strong enough to knock me out, keeping me from accomplishing anything productive. Spending the day in limbo just made me weaker and incredibly bored, longing for 9 p.m. when I could ask for an Ambien.

I was very encouraged to hear that New Jersey will join 14 other states in allowing the use of medical marijuana for patients with certain medical conditions. The NJ Assembly and Senate passed the New Jersey Compassionate Use Medical Marijuana Act earlier this week. Now patients with HIV, AIDS, cancer, multiple sclerosis, muscular dystrophy, ALS (Lou Gehrig's Disease), Crohn’s disease and other chronic or terminal illnesses, will have an option for pain management that many people believe is long overdue. My treatment will end in April or May, before the new law will be implemented, but by the end of this year, many people will be able to take advantage of this alternative. I’m told that patients who need medical marijuana for pain will not feel stoned, they will just get relief from their pain. If my experience with the synthetic Marinol is any indication, I’m sure that’s true. (I didn’t even get the munchies.) If it were otherwise, I suspect we would have heard reports from the 14 states that have already enacted similar laws. If we notice happier seniors in our nursing homes, it’s not because they’re high, it’s because they’re in less pain. Having another way to manage pain is a step forward. No one should have to suffer.



Tuesday, January 5, 2010

Back in Another Blue Room at Hotel Englewood

Returning to a community hospital for a week is like coming back to a cheap, somewhat sadistic, motel. I arrived yesterday for the first of four rounds of chemotherapy. I'm in a shared room, although my roommate left yesterday and I'm hoping I can avoid another "guest" in my new blue room. (It's not that I don't like people. I just don't like sick people in my space when I'm already sick and cranky.)

The layout of the shared room is different, but it's basically the same overwhelmingly creepy experience. I try to make it work for me, as we all do when find ourselves with less than comfortable lodging arrangements that we can't change. There is a "housekeeping" department. Someone answers (most of the time) when I call the "front desk." Room service? Hmmm. That's a stretch. Trays of food are delivered on a somewhat regular basis, but the menu is limited and includes a lot of jello. The linens are changed everyday, and "Guest Services," which is actually called "Guest Services," stops in to ask if my stay is comfortable.

Upon arrival, I complained about the squeaky bed, asked for an extension string so that I could control the overhead light, and called the diet office to register my food restrictions – no dairy, no red meat, bottled water with every meal. Then I rearranged the chairs (claiming the recliner for my side of the room, in the spirit of what many office workers do when someone quits or is fired), asked for a second table for my laptop, plugged in all my chargers, ordered TV service, unpacked my suitcase and my carefully chosen "Kathy hospital food" backpack, labeled my grocery bag for the pantry refrigerator filled with almond milk, protein drinks and V8 juices, and settled in. It was nice to get a warm reception from the floor staff. Lots of people were very friendly and helpful, and I'm now able to see their faces without masks.

Englewood Hospital is not a bad representation of such medical "hotels." It's actually one of the better models. Many rate much lower. For a Zagat rated hospital, "reserve a reservation" at the Marburg wing of Johns Hopkins Hospital in Baltimore. It's a 5 star experience, which is why celebrities and royalty pay big bucks to stay there. I know this only because the hospital ran out of beds one time when I had to stay overnight after one of the radiofrequency ablation (RFA) procedures. Until the staff figured out that I was a "non-paying customer," they sent in a food server wearing a tuxedo to take my Tea Time order. But she disappeared before I thought to ask for a crumpet. For the right price, you can order lobster or whatever you crave, and you'll be served your favorite meal on fine china. The furniture is expensive cherry wood, and there's a full service lounge for family members to use, complete with computers and yummy snacks. And of course, there are flat screen TVs. Since I wasn't a paying customer, I doubt if my nurse would have accommodated a request for a foot massage, as she did with the woman down the hall.

Back to reality in the blue room. The chemo doses during consolidation are much stronger than they were during induction. The side effects so far, headache and nausea, are equally more intense. Dr. Forte says that the trick is to find drugs for the side effects that don't cause different, and worse, side effects.

I'll be here until Saturday morning, getting chemo on a Monday, Wednesday, Friday schedule, which is turning out to be a pain in the neck. I had to have a bunch of tests and procedures after I was admitted yesterday, so we didn't get the show on the road till 1:00 p.m. The chemo runs for 3 hours and is then repeated 12 hours later. This meant that I got yesterday's second dose from 1:00 a.m. to 4:00 a.m. this morning. Thankfully, I can just sleep through it and hope that the drugs for the side effects last through the night. At least today and Thursday are days off.

Once I return home, I'll recover for about a week till my immune system crashes and something gives out. Either I'll get sick from a fever or some infection and need to be readmitted, or my blood counts will be too low, I'll need transfusions, and need to be readmitted. Either way, I'm likely to end up back in an all too familiar blue isolation room again, with masks, in the middle of January until my counts climb to a safe level. Maybe it's time to propose a Reward Points Program for Hotel Englewood. I could earn a year of leukemia free test results, which I would then convert to a permanent reward somehow. I'll put that on my To Do list.